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Everything posted by T_Mom

  1. There is quite a lot published on EMFs -- here is one of my old favorites from the New Yorker, and Jens I post it for you as it has a Swedish connection! http://www.newyorker.com/archive/1989/06/12/1989_06_12_051_TNY_CARDS_000355634
  2. I like to think of a 504 plan as "leveling the playing field", it provides ways for the student to access the material that is already being offered in a class setting. Whereas an IEP provides just that, an individualized ed. plan. There were some excellent article resources for teachers explaining P's, they may be pinned under "helpful threads" at the top of the forum, and/or be located on the www.pandasnetwork.org site under resources-- Good luck with this, keep it up!
  3. Gallentine and Van Meter at Duke are treating "autoimmune encephalitis", P'S construct fits within that category. They advocate a thorough bloodwork up. Treating typically with monthly IVIG, first dose stronger then the others. Medications as needed. They are taking an open approach to looking at the causes and outcomes of AE.
  4. I am so sorry you are going through this--and can completely understand your wondering re: other labels. The telling thing to me is that the teacher HAD STREP...was the classroom wiped down after that was discovered? I would almost keep him home until they do wipe it down, or you ask to--no joke, if you are sick at home, and there is strep in the classroom, that would be a recipe for disaster for my kids. Raging, OCDing, etc. spikes and will die off in a few days typically if anyone has strep at school. Your son is on antibiotics now, is it treatment level as if he had strep ? Can you get him tested for strep anitbodies via bloodwork tomorrow, and a throat swab? I would--just to be sure. One final note, you saw great improvement with the IVIG, remarkable, unmistakable good things post IVIG-hang on to that. Give the brain 9 months to heal... There are some docs treating with monthly IVIG. Dr Gallentine at Duke is doing this for chronic kids. I hope you see continued progress, even if stair stepped in nature--
  5. I will throw our experience in here, for what it is worth--as it does seem to me, that there may be something to improvements once kids go through puberty. Our older d is now 15. She had sudden and severe episodes, when exposed to strep in others, and/or illness in others for about 4 years. She had pheresis, followed 4 months later by IVIG and her symptoms abated, slowly fading completely. Around the same time puberty had finally "settled" and she was definitely on the other side of puberty when we could see what appeared to be a recovery-- Due to finally hitting the right treatment for her?...puberty?..or a combination perhaps, but she has been symptom free now for about 2 years. Our younger d (13) is finally, thankfully, coming out of the horrible episode of last year--post pheresis now 14 weeks. Remain hopeful.
  6. Thanks everyone. Nicklemama I read that section the same as you--however, the concerning thing for me is that I have a daughter who is out-of-control raging with ups and downs now, after 9 months of ALOT of antibiotics, 2000mg of Augmentin and 250 mg Azithro...and this article says: 'Although the psychotropic effects of antibiotics are not commonly utilized therapeutically, the commonly associated side effects confirm their potential to influence CNS function. Several antibiotic medications have been known to cause confusion, anxiety and depression and in some instances, psychosis [13]. Although unfavorable in a therapeutic context, these effects are often influenced by age, dosage, blood–brain barrier (BBB) permeability and drug interactions. need I say more? I am scared right now--and having gone to a variety of specialists, etc. I am still not hearing anyone be able to tell me that this is OK, or not OK for a 13 year old at 100 lbs. I tried to cut it back and she had a really good day! -- then the next day the bottom fell out of our world yet again. This is getting to be all too much. No really, I mean it. This has taken the world we knew and spun it upside down and inside out. And the crying shame is that no one, no one seems to be able to give us a definitive direction anymore. and I am terrified that no one but us are really following this anymore too.
  7. I really need support in looking at this--any insights appreciated. This article, co-authored by Dr. Tanya Murphy mentions the possible effects of various antibiotics on autoimmune issues, and the section on Augmentin I am cutting and pasting below-- Is this saying that too much could be a real issue for some kids--making symptoms worse??? Please help me decipher! I tried cutting back on the 2000mg Augmentin, (back by 500 mg) and for 24 hours she was much better--then the next day raging out of control again. Psychotropic effects of antimicrobials and immune modulation by psychotropics: implications for neuroimmune disorders Demian Obregon, Ellisa Carla Parker-Athill, [...], and Tanya Murphy ..."Several antibiotic medications have been known to cause confusion, anxiety and depression and in some instances, psychosis [13]....Although unfavorable in a therapeutic context, these effects are often influenced by age, dosage, blood–brain barrier (BBB) permeability and drug interactions. Research into the mechanisms behind these effects may help to elucidate a therapeutic application. Penicillin for example was known to act on GABA receptors, a mechanism thought to be responsible for many of the side effects [14] '''Although the psychotropic effects of antibiotics are not commonly utilized therapeutically, the commonly associated side effects confirm their potential to influence CNS function. Several antibiotic medications have been known to cause confusion, anxiety and depression and in some instances, psychosis [13]. Although unfavorable in a therapeutic context, these effects are often influenced by age, dosage, blood–brain barrier (BBB) permeability and drug interactions. Research into the mechanisms behind these effects may help to elucidate a therapeutic application. Penicillin for example was known to act on GABA receptors, a mechanism thought to be responsible for many of the side effects [14]. Other classes of antimicrobial compounds, particularly the antimalaria treatment methylene blue and several antituberculosis drugs, have been shown to have monoamine oxidase (MAO) inhibitor (MAOI) properties. Similarly, many psychotropic drugs are known to have significant immunomodulatory effects, particularly agranulocytosis. While these effects are not considered therapeutically useful, it is important to understand, especially in light of recent knowledge of immune CNS interactions, how this interplay affects therapeutic efficacy and how it can be manipulated pharmacologically. Among those compounds with actual psychotropic activity, teasing out whether this activity is due to CNS neuroimmune modulation or resulting from direct effects on neurochemical function is often difficult. Despite these significant limitations, in this review some of the investigations attempting to characterize the dynamics of these compounds with multimodal effects in an effort to better understand their possible roles as preventatives, therapeutics and confounders are explored. From a clinical perspective the understanding of ‘off-target’ effects of antimicrobial agents can be critically important in the case of drug interactions and adverse reactions; however, also important, are mechanistic insights gleaned from existing compounds, whether formally antimicrobial or psychotropic, these can altogether aid in the discovery and development of new therapeutic targets and potentially new future preventatives and treatments. Infection, immune dysregulation & neuropsychiatric disordersAlthough the evidence supporting the role of infection and immune dysregulation in the pathogenesis of neuropsychiatric disorders seems significant, conflicting reports and a lack of clinical research has resulted in some reluctance to accept this as an etiological factor particularly in disorders such as PANDAS. Evidence from other disorders, however, point to a role for infection and potentially more importantly, the resulting immune disruptions in precipitating neuropsychiatric symptoms. In schizophrenia there is increasing evidence to support the role of specific pathogen exposure and resulting immune activation in precipitating the neuropsychiatric symptoms observed clinically. Several studies have alluded to a possible role for Toxoplasma gondii, a parasite commonly found in cat feces and of immense concern for pregnant women and is thought to infer increased risk for the disorder, possibly precipitating clinical symptoms. There have been findings of increased seroprevalence of toxoplasma antibodies in schizophrenic patients as well as observations that the parasite may affect dopamine signaling, a pathway commonly disrupted in schizophrenia [15,16]. The strong association of neuropsychiatric symptoms in autoimmune disorders and the mounting evidence to suggest antigenic mimicry as a central mechanism in infection-mediated neuropsychiatric symptoms strengthens the hypothesis of immune involvement, mediated by infection, in the appearance and progression of some neuropsychiatric disorders. In Grave's disease – an autoimmune disorder characterized by the production of excess thyroid hormones due to thyroid receptor autoantibody – anxiety, panic disorders and OCD are often associated and, in some rare cases, psychosis-like symptoms have also been reported [12,17]. Antimicrobial agents with psychotropic effects The role of the immune system and, more importantly, its dysregulation in neuropsychiatric disorders has not only hinted at a potential pathological mechanism but may also provide new therapeutic alternatives. Antimicrobial agents are an appealing class of compounds owing to their inherent immunomodulatory properties. In addition, several of these compounds have been shown to have direct CNS effects, which may further hint to their efficacy in the treatment of some neuropsychiatric disorders, particularly those with an established or proposed immunological component. β-lactams: penicillinβ-lactams are a class of antibiotic compounds with a cyclic amide ring, a β-lactam, as a core component of their molecular structure. While penicillin, named after the genus of the original producing mold, is the most prominent derivative, other members include cephalosporins, monobactams and carbapenems. β-lactams’ antimicrobial activity is attributed to the structure and activity of the β-lactam ring connected to a thiazolidine ring that binds and inhibits bacterial transpeptidase, thereby disrupting peptidoglycan synthesis necessary for the formation of the bacterial cell wall and, thus, preventing cell division. Other penicillin target proteins include holing-like proteins in the cell membrane of certain bacteria [18]. While primarily utilized for their antimicrobial activity, β-lactam antibiotics were found to promote the expression of the glutamate transporter GLT1 and have a neuroprotective role in vivo and in vitro when used in models of ischemic injury and motor neuron degeneration, suggesting significant neuroprotective properties [19]. Azithromycin (AZM) and penicillin have been utilized in the treatment of PANDAS, with observations of improvement in neuropsychiatric symptoms after 2–6 weeks of antibiotic treatment [20]. Although eradication of chronic latent, undetected GAS may be responsible for these observations via lowering antigenic load and immune activation, the potential for pleotrophic effects is possible given the effects on glutamate, immunomodulation and neuroprotection outside its antimicrobial actions. Given the potential role of glutamatergic therapies in OCD, depression, TBI, neurodegenerative disorders and schizophrenia, CNS-permeable β-lactams could be expected to exhibit efficacy in these neuropsychiatric disorders but further study is needed. In a recent study investigating the effects of cephalosporin in a mouse model of major depressive disorder, ceftriaxone, of the cephalosporin family, was shown to exhibit antidepressant properties increasing glutamate uptake, thought to be impaired in major depressive disorder [21]. Clavulanic acidClavulanate is a β-lactamase inhibitor commonly used in conjunction with amoxicillin to overcome antibiotic resistance provisioned by β-lactamase production by some bacteria, but has no significant antibacterial activity when used alone, despite containing a β-lactam ring. This structural similarity, however, is integral to its inhibitory mechanism allowing it to irreversibly bind to and inactivate bacterial β-lactamase [22]. Clavulanate readily crosses the BBB and has demonstrated anxiolytic properties in rodents and nonhuman primates [22]; a mechanism possibly due to increased dopamine release [23] or due to its possible effects on glutamate transmission through N-acetyl-l-aspartyl-l-glutamate (NAAG) peptidase inhibition. Specifically, clavulanate through NAAG-peptidase inhibition may decrease glutamate, enhance NAAG stability and consequently lead to greater metabotropic glutamate (mGlu)3 receptor (mGlu3R) activation. Known agonists of mGlu3R appear to display anxiolytic, antidepressant and neuroprotective properties in animals [24]. Moreover, mGlu3R activation is associated with reductions in glutamate release from the presynaptic neurons and decreased excitotoxic glutamate-mediated neuron damage [25]. Further, NAAG-mediated mGlu3R activation on glial cells appears to lead to release of trophic factors [26,27]. In accord, clavulanate enhances TGF-β release from glial cells possibly due to it's ability to inhibit NAAG peptidase [28]. Through reductions in glutamate, enhancements in dopamine and trophic factors, clavulanate displays significant potential as an antidepressant and anxiolytic agent. Phase IIb clinical trials for major depressive disorder are pending [23].
  8. First-- I do wish we could have a "do over" as you say of the months/years lost in illness...if only! I remember asking Dr K ...but HOW will I know if there is an effect from the steroids??? His measured response was "it will be a sudden and obvious change".He made it very clear that IF there was a change from the steroids we would know it very clearly...it would be obvious, and it was! Ours have varied in time post last day of steroids -- but one time the sudden and obvious change was a few weeks later! You will know If they help--
  9. EAMom , youngest d (who has had a terrible year -- IVIG and pheresis) ... Finally getting back to herself -- had a few positive bands which were not CDC positive, but both Dr Fallon (NYC two years ago) and then Dr J (Conn) this past spring thought merited "treatment" -- 8 weeks of Doxy by Fallon and Dr J felt the months of Augmentin plus Azithromycin would have already been treating it-- Was she really positive? I don't know, but I do know with pheresis and CBT she has improved these past 7 weeks .
  10. I have been wondering about the same thing, if being on Augmentin and Azithro can be causing problems and activating rage/OCD.... Given that our d was also given Tindamax, and after the second weekend we were calling Dr J in a panic as she was becoming worse, worse, worse, (he told us to stop it immediately, btw)... Perhaps some kids just get worse on too many antibiotics. The herxing paradigm makes sense, but if cutting back, or stopping antibiotics helps??? -- seems a no-brainer to me.
  11. This article is amazing!!!! How can we thank these people, what an amazing group of researchers!!! THANK YOU!!!! Must admit, I understand little of this or the implications--We need a Buster interpretation, as to the ramifications of this research for our children and treatment!!!!!
  12. I have been wondering along a similar line--My d has been on 2000mg of Augmentin and 250 Azithro for months now, her volatility is off the charts at times and I can't help wondering if she is on over load of abx-- Has anyone seen or heard of bad reactions to abx like this?
  13. It is , "turn the other cheek", time and again... We have had this as well, out of control raging -- and yes, it looks BAD. Especially when they get wide eyed and start talking in a different voice, in between throwing -- screaming -- and destroying the house. I just came back to the house to our youngest standing on one foot, staring--and doing OCD rituals in her head. I asked her if there was anything I could get her and she lost it--screaming, swearing at me, and threw a large glass hurricane lamp on the floor-- broken glass everywhere. Funny thing is, at this point I quietly went upstairs to leave her field of vision--and now will go down to tend to the glass. --and then it passes. This morning, on the way to summer school and due to OCD raging she sat screaming at me from the front seat of the car, while parked in front of the house. Screaming obscenities, again, and again, and again.....honking the horn intermittently. This episode included me leaving the car to go back in to the house and her following me, hitting and pulling my hair... I have spent the day on the phone trying to find someone who might help us to address these now (thankfully) more and more infrequent lingering jags of ODD behavior. If you know of anyone in the Washington DC area please email me! THIS was not the way any of us were taught to raise our kids, and certainly the swearing is an absolute "wrong" in our family, as well as this over the top expression of aggression and anger (triggered by OCD.) On a side note, she just poked her head in to show me her "new" dress from a shopping outing last week--(and in her mind, the incident is past now--no mention of it from either of us as that will set her off -- again.) In our case, I can tell you that physical treatments have been a saving grace, with IVIG, antibiotics, and pheresis setting us in the right direction...though getting to wholeness each time takes time, these physical treatments have very obviously been of help to our family time and again. I agree with PowPow's comment -- "...& during a rage, duck!" ps--when not in an episode, she is the sweetest, kindest most normal child you could see--
  14. Hi -- since he responded so well to steroids and then IVIG, getting to 95% -- that is huge. Did the lyme/bartonella come back in Western blot testing? -- or was it just one or two bands? The reason I ask is that our d (13) was identified as "having" lyme last year as a result of two bands, and we lost about 4 months of her year as we chased down the lyme rabbit hole (no flying tomatoes please! ...we saw Dr J in Conn......etc. etc. It was exhausting and disappointing. She was put on very strong antibiotics and after months now I think that some of her negative reaction may be related to the level of antibiotics -- or the combination being too much for her-- I want to raise this issue as it seems for some kids too much abx could and does cause an overload reaction. (Could this mistakenly be seen as "herxing", I think in our case it was.) We watched in horror our daughter's reaction when put on Tindamax, and subsequently she has been on Augmentin and azithro now for months. What does your gut tell you? If you think it might be better to treat according to an autoimmune construct, since past treatments were successful, then I would certainly discuss with Dr B. and look at another IVIG possibly--
  15. Mdmom we were denied by our insurance -- We then appealed to the state of MD and the state over turned the denial. The insurance code was post infectious encephalitis and the diagnosis PANDAS
  16. So LLM, which probiotic are you using for the kids? -- and for a straight PANS profile, what would you recommend? thanks--
  17. Thank you all--this Friday it nwill be two weeks since the last day of pheresis. Initially we saw clear improvements, and it seemed she was getting better. However this second week her OCD rages are over the top when they happen, though there does seem to be more time in between, and it is not 24/7...she is at home with us, which she could not be for the 5 weeks pre-pheresis, so that may be an issue of course. Regardless, I am hoping and praying that it will be the good result eventually. I have wondered about5 episodes of pheresis (ie NIH study) and the three that we had done. My older d had pheresis 18 months ago and is now 110% -- and I attribute her recovery to the pheresis and getting through puberty. She is 15, and had 3 pex treatments. Has anyone ever talked about a worsening prior to recovery with pheresis? Like the "turning back the pages/" I hate this.
  18. How long until improvements are seen?
  19. I can tell you that we changed pediatricians, after 12 years of having the same one, who I still respect and would recommend....for anything BUT PANS! remarkably, we saw our ped. in a practice that had about 5 docs total...and our own, long-term ped., recommended we see a different pediatrician in the same practice --! She said the "other" ped. was more open to PANS...and you know, we have been delighted with her! I would say you should consider changing doctors....I would try calling pediatric practices and asking if the doctors know about (and treat) PANDAS. I do believe you will find someone, though it may take some time --
  20. I think if you could get your doctor to give you a referral to "get your foot in the door" at NIH that may be ideal. Did your doctor have a suggestion as to a doc at NIH to see? I would also email (or try to call) Dr Paul Grant or Dr Susan Swedo to see if you could be evaluated for the NIH IVIG study, and to get in to see them -- or ask if they could collaborate, help assess your child -- with the doctor your pediatrician suggested to see at NIH. I am sorry it sounds like this is incredibly tough, for all of you-- NIH may be a good place to go to for an overall work up and to try to see the doctors who ARE familiar with PANDAS/PANS-- If you can get in to get evaluated - that is what I would do. Also, re: your initial question; :"Are there any hospitals you trust...." It is not the hospital so much as you need to have a doctor that will admit you, and/or evaluate you --
  21. Our d (13) is on the same, Augmentin XR 1,000 twice a day and 250 azithromycin. I don't know if it is working, it has been a few months now and she has not improved on it--
  22. Praying for your son and for his complete and speedy recovery-- hugs, Tmom
  23. I so agree -- with both of these statements. It can be "in the moment" OCD raging, and yes, long term with no treatment may have devastating effects.
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